Jean Bentley Dec 7, 2017 4:20 pm @. Could I use it for my chronic fatigue? For the first seven years of illness, I had no symptoms I associated with my neck. With it, the line of my spine and the surrounding tissue gets contracted or expands a little bit. That said, I dont blame patients objecting to this kind of recovery story. Then, this highly-seasoned neurosurgeon finally did the work that every other doctor had refused to do: He took a genuine interest in my symptoms, and he ordered a correct form of dynamic imaging required to assess for CCI/AAI - a dynamic CT scan with flexion and extension views. With all of us working together who knows what will happen? Im in awe of what both of you have achieved. When given the chance, the body can come back from an amazingly debilitated state. I wanted some sort of cervical traction because my head felt too heavy. Using the old trained skill wont help you much and just confuses you. Brea's health unraveled three years ago. We have a very different lens in looking at chronic conditions vs internal medicine. Your email address will not be published. It did worsen my instability, which is how I got diagnosed and treated. The problem is not someone becoming well but the shadow that recovery casts on our current situation. I only started the Perrin exercises about 6 months ago so that cant be why the hump is lessened. [1][2] https://rarediseases.info.nih.gov/diseases/13193/hereditary-alpha-tryptasemia-syndrome But like Ive shared multiple times in comments, my daughter had CCI and mild chiari and tethered cord. There are not so many upright MRIs machines and so many doctors who are not so appraised on diagnosing these conditions, will do a regular supine MRI. What I want to know is why arent you and Jen counting Dr. Rowes patients as having recovered from spinal surgery? Re Jen and Jeffs CCI surgery, if in theory their CCI was caused by inflammation triggered by an enterovirus that caused Classic ME in others, why would treating the CCI heal all symptoms, surely some illness would still be remaining? Confounding things I was also exposed to mold right around the same time (and I tested as mold susceptible). Ive had neck issues for many years, but cant convince doctors to investigate. But the other hand is less delightful. If anything their recovery may reinvigorate the medical field by showing how profound the impact of things like physics, gravity, interaction between organs and signalling throughout the body can be. With ME we can safely say that the range, strength and control of our skeletal muscles is below par. Anothers surgery is on tap and one was recently done. Dean, I couldnt agree with you more. Jane Colby of UK ME childrens charity, Tymes Trust tweeted just the other day the UK MRC some years ago dismissed her proposal to build on Dr Betty Dowsetts work (Bryon Hydes too) and that the infecting viruses in ME could be identified, given the will There was no will and they didnt want to know. Reason being that NEITHER Jeff nor I had overt neck symptoms before our surgeries. Traction is very dangerous in CCI. Both Jen and Jeffs stories highlight the need for a really good diagnostician someone who is plugged into the latest ME/CFS news. Lacking those things, a doctor can simply pull the patients head up off the spine in the doctors office, and see if that helps! Jen and Jeffs stories place a new emphasis on the brainstem in ME/CFS. And, again, this would also fit in with the prevalence of ME in the EDS population. Other people can take of that. Relative to others I have mild ME/CFS but theres nothing mild to me in something that precludes me from doing just about any exercise at all. Yet it did. The Zebra Network and other websites report three central symptoms of craniocervical instability (CCI): Other symptomscan include neck pain, central or mixed sleep apnea, facial pain or numbness, balance and coordination problems and vertigo, dizziness, fainting, vision issues, difficulty swallowing, choking, tinnitus, nausea, vomiting, paralysis, downward nystagmus (irregular eye movements). Also, its always puzzled me why ME/CFS has different causal factors prior to onset in different people. Thanks so much Cort. That said, this news has spurred me in a new direction in the chase for the cause of my ME/CFS. Thats how genuine he is. It was a bad diagnosis and all it does is distract from the work at hand to funnel money into the diagnostic test and other symptom minimisation research. Joint hypermobility with its possible complications is now classified using the idea of a spectrum. I had 4 episodes of viral thyroiditis before I had it removed. A procedure called AltasPROfilax, specialized chiropractic care and the Perrin technique is another possibility for those with neck issues. To his surprise he met the criteria. I directed the Sundance documentary UNREST and co-founded #MEAction. amzn_assoc_height = 250; Maybe it does then. Dejuergen, if in theory Jen and Jeffs CCI was caused by inflammation triggered by an virus why would treating the CCI heal all symptoms, surely some illness would still be remaining? In short: spinal stenosis can potentially (help) disrupt blood and oxygen flow to the brain, cause inflammation of the main spinal nerves leading to a rigid posture and tense muscles wasting energy and more IMO. The need to get the news out to make sure that everyone benefits is one reason we need strong advocacy networks everywhere now. I think the really compelling thing about mechanical explanations relating to the neck and spinenot just CCI, but mechanical Intracranial pressure, cervical spinal stenosis, etc etc. is that it can potentially speak to two of the biggest puzzle pieces in ME: It is from this experience that drove me on to, in very short, to become a Ayurvedic Naturopath and then medical doctor and work with people with the incurable . I felt uneasy writing moderate as well. I had something similar. Her new health she says she will stay involved is a gift not just to her but to all of us. My uncle once told me about a warrior who had a fine stallion. That was probably due to improving the flow of pooled blood in the legs to the hart. It has helped a lot with my pain and function, though not a cure. -scrub typhus (since treated) The sick raise their heads to be counted again. However, and I state again, she was not an HEDS patient. We have had to deal with mountains of misinformation over the past 30 years, with a long line of false hopes, quack treatments and cures. via a stunting of the anti-inflammatory response. It can be grueling and I was exposed to a lot of medical trauma during our three plus year investigation and not from the super specialists but from all the gate keepers, all the ruling out docs and their people. The people said it was unlucky. I will never forget the experiences that I have gone through over the last eight years of illness. All of us know that any level of ME/CFS robs us all of so much of what we would want for our lives, this is the one place we dont have to explain that. We hear stories about how there have been no reports of adverse effects of x, y, or z but then you look and there are lots of anecdotal reports. Thanks Nancy. I hope thats so! I had severe post-viral myalgic encephalomyelitis (ME). A chronic illness or disability can affect an adolescent in many ways: Complicating their development of independence Interfering with their connection to peers Introducing a new set of emotional conflicts during . That procedure sounds about as spine-tinglingly scary as anything I can imagine. I used to have ME but it is now gone, thanks to neurosurgery. beginning to think that this is not a case of recovery from MECFS but rather its a case of misdiagnosis of MECFS in the first place. I send you love and every wish that you will get help soon. The story of remission makes it even more clear to me than ever that we must fight for research to better understand the mechanisms underlying all of our cases. However the cause of vagus nerve and peripheral nerve signaling problems were my two structural, neurological problems: CCI/AAI and tethered cord. Please note: You may need to reduce your dosage or cycle off it periodically if it becomes less effective. youve forgotten them or they are lost to you. Given the recent brainstem findings, though, stopping at the motor cortex would seem foolhardy. Someone with HSD can be just as symptomatic, more so even, than someone with hEDS. We know Jen Brea and her husbands story on an intimate level through Unrest. I also wonder if the long term bed rest could contribute to ligament laxity (?). As an Ayurvedic physician I can help people unhook their identities from their suffering and heal. In fact, the tryptase from the mast cells will likely continue to degrade the collagen, to my understanding, so such a surgery would only be a temporary band-aid for *some* symptoms, not all. Tip! I myself had pectus, which was brushed off as a cosmetic issue. She knew her PEM was gone immediately after the CCI/AAI surgery. I am trying to get the sympathetic dominance under control a bit here. This is such an obstacle that it almost makes me wish Id never heard of CCI! Five years ago, TED Fellow Jennifer Brea became progressively ill with myalgic encephalomyelitis, commonly known as chronic fatigue syndrome, a debilitating illness that severely impairs normal activities and on bad days makes even the rustling of bed sheets unbearable. Jennifer Michelle Bra and Omar Tomas Wasow are to be married Sunday outside the Aquinnah Lighthouse in Aquinnah, Mass., on Martha's Vineyard. He is located in Brussels, and I have heard of occational home visits. We may have weird neurological symptoms that do not squarely fit onto any list, and a growing number of us (not without some controversy!) After working as a freelance writer covering China and Africa, she enrolled in a doctoral program in political science at Harvard. Ill leave Jennifer and others to judge upon how it affects them. What I have found most interesting is that I also have spinal conditions too, spinal stenosis, osteo- arthritis, diagnosed in my mid-30s . BUT, I cannot exercise in any meaningful way (although walking is generally OK). Thanks for the informative article, Cort! Also in terms of severe, moderate, mild these are relative terms. And whether if you have cervical spinal stenosis, are you more likely to have CCI and other instability issues? Next day, the stallion returned, leading a string of fine ponies. There is a huge emotional adjustment that comes with recovery, especially after decades of illness, but for me that journey is a beautiful unfolding to becoming my new self. Its a shitty life but im above ground for now. The winner for one recent onset but severely ill patient was desmopressin something that doesnt work that well for most. The fear I think is due to the lack of support weve had over the years and still do. Can you make a correction to your article? Jen never had ME/CFS. 'Charismatic, smart and determined': Jennifer Brea with her partner, Omar Wasow. I benefit enormously from neck traction-like interventions like the neck hammock. I would love to know how your consultation went. Sounds like I am like you Cort. The same happens for example when the blood flow to the brain is impaired by inflammation blocking good brain liquid drainage. She will not pursue the tethered cord surgery because of that. my head goes clean through the rear window of the truck and im knocked out. So glad some are helped, but its not something to jump into without lots of research. The other thing that happens is that the tension in the brain part of the bag rises a bit. For those of us still with ME/CFS, look to others who are not flashes in the pan. These are not symptoms that are easy to fake.. Pressure headaches generated by things like yawning, laughing, crying, coughing, sneezing or straining. All these things (for some people at least) help the body eliminate toxins. Browse 72 jennifer brea stock photos and images available, or start a new search to explore more stock photos and images. But i am very happy for her . Another remarkable thing is how sick some people can get and still recover. and not as referrable to any specific part of my anatomy for the vast majority of my illness. A tethered spinal cord seems to be especially common in ME patients, though we need further research to confirm this. But it would mean that every single Jennifer, Jeff and the many others help shed light on a single aspect of this complex disease and help pull all of us bit by bit out of this swamp. And I am talking about my daughter who improved from CCI surgery but it did not cure her. The EDS / ME/CFS connection is getting ever more interesting. Has there been any research using Infra red light therapy , it is low cost, non invasive and the target areas are the Gut Microbiota, no medication is required. Brea, Jennifer (May 20, 2019). Im sure Ron and Janet have thought a lot about this. Thats one of the startling things about this condition. Don't miss another one. Im just reading his book and had a eureka moment. If he did test positive I wonder if a) he could get to a neurosurgeon and b) if he could survive the surgery! Jen I just really hope it works, and not only longterm, but for the rest of your life. We will work together . This is why Im curious if Jens MCAS or mast cell activation came on as a result of environmental trigger (mold) or has a genetic origin. This is really interesting to know. Hey Cort! Everybody said how lucky he was to have such a horse. I went from 40% functioning to 60%. I wouldnt be surprised if Jennifers operation helped drain toxins from the spine. Jan 17, 2019. Exactly Issue. Ann again you are right, Doctors are still in the mode of one-cause-one-disease.. Jen may be the only person some people feel they know with ME/CFS. The great majority of patients with MECFS do not have Borderline Intracranial Hypertension. It was a much more difficult and riskier surgery than should have been had it taken place 30 years earlier, and recovery was much tougher and longer. food list I could not believe the foods I reacted to already & it goes undiagnosed, one girl she is allergic to her braces in her mouth she has the illness she is also Allergic to stainless Steel products knives forks spoons pots pans etc. It all comes to late. Find Jennifer Brea's phone number, address, and email on Spokeo, the leading online directory for contact information. Jens and Jeffs stories make me think of Whitney. The fact that 20 people on the Phoenix Rising Forums have been diagnosed with craniocervical instability/atlantoaxial instability (CCI/AAI) over the past 8 months or so is remarkable, and suggests that the condition may not be as uncommon as one might think. I was a responder to these drugs and (and to mold avoidance). Also EDS tissue can have a tendency to stretch and droop out of position. But Im leery of these fixes. (Dr. Chedda reported that she routinely does this.). Im very happy for Jen and anyone who manages recovery or remission, Im a tiny bit scared of losing her as one of our primary advocates. It makes sense as those are computational far far less complex to do. I was recently diagnosed with Pyroluria. Structural issues arent the only way to potentially tweak the brainstem in ME/CFS; inflammation, infection or autoimmunity would probably do quite nicely, and some evidence suggests at least one of these may be happening in ME/CFS. Mattie, a web developer in the Netherlands, had a gradual onset of ME/CFS in 2010 and slowly declined over time. Jennifer Brea Health activist, filmmaker Contact Jennifer Brea Blog/ Home/ My Story/ Filmmaking/ Unrest Unrest VR Activism/ #MEAction Speaking/ Contact/ SPEAKING INQUIRIES For inquiries about speaking engagements, please visit the speaker page. Go figure. the toxins) in the lymph system reducing the hypothalamus function. Yes. (X-rays are not sufficient to test for this condition, however.). Nor could I ever feel any envy. Maybe they thought cfs was related to these outbreaks: https://www.betterhealthguy.com/episode98, I have found the article below very important and relevant to the topic. After some reflection, I dont think its as bad as that. Agreed. At one end is simple hypermobility which causes no symptoms, is not a disease and is a trait, like height. With that in mind, Ill continue the protocol to find out of CCI is likely to be my way out of illness. Worauf Sie als Kunde bei der Auswahl der Nici qid achten sollten. I would dearly love to get my hands on Mestinon and my mind boggles at the testing regimes and treatments that some patients are offered in the US (as they rightly deserve). Issie on May 29, 2019 at 12:52 pm BTW, there were several miraculous recoveries from brain stenting as well. Its going to get really interesting! Decades after falling ill it was corrected. I had a very long onset, starting with loss of very high functioning memory (both muscle memory and factual memory) approx 18 years ago, with PEM and more severe cognitive issues showing up 4 years ago. I was bedridden and wanted to find a solution. Her debut feature, Unrest, premiered at the 2017 Sundance Film Festival and received the US Documentary Special Jury Award For Editing. I had at some point absolutely no clue how to do it. kryptopyroluria When doctors tell her "it's all in her head," she turns her camera on herself as she looks for answers and fights for a cure. Angela, I agree with Cort, Nicely said! Glad she is feeling better but the vast majority of CFS / ME patients do not have this and some have died in this surgery. I would put anyone whos in a wheelchair as having a severe illness however. In that same view, if both my keen senses and my PT and my views on how things connect to each other are correct and play an important role in the brain blood flow and waste removal, having such spinal problem solved would touch to (part of) the core of ME disease. I am one of those rare people that the illness was shutting down physically and crippling me due to brain inflammation. 25 records for Jennifer Brea. I wish you all the best in your continued recovery! E.g. Thanks to one neurosurgeon who watched my TED Talk and film, an amazing internist, and an intrepid patient, I found my way to a second surgeon and a diagnosis of craniocervical instability and tethered cord syndrome. On hisMechanicalbasis website, Jeff provides crucial advice for getting tested and fully diagnosed including how to get your scans into the right hands. Symptoms of autonomic nervous system functioning problems such as tachycardia (rapid heartbeat, heat intolerance, problems standing (orthostatic intolerance), gut motility problems, thirst and chronic fatigue. It makes me unbalanced as there is so much to relearn and few usable time and energy. I am so happy for Jen Brea and I hope that she extracts every ounce of joy out of her newfound health and second chance at life. As you highlight, this type of surgery is very risky it should only be undertaken where the evidence is clear and the surgeon is competent. It contains Huperzine A (HupA), Thiamine (B1), L-Carnitine and A-GPC (a form of choline) and is available via Amazon. It was a bit devastating at the time, but I just carried on thinking my memorisation capabilities would return. The most important thing for ME/CFS researchers now is to try and write a narrative that makes it appear as if they had. Huperzine A caused tummy issues with me, as did mestinon. One quick clarification: I didnt have overt neck symptoms until after my thyroid surgery. Rather then potentially never having had ME, they may have addressed a key component of ME: dis-regulated blood flow in the brain due to blocked spinal cord movement and spinal fluid flow. Apparently she had the surgery here and then went to Dr. Bolonesse (sic) in Europe for followup surgeries which failed. If you have ME and are contemplating such surgery you should be extremely circumspect and examine the evidence with great care. amzn_assoc_search_type = "search_widget"; The only things we really know about recovery is that: a) its not common; and b) it occurs in a variety of ways. I highly encourage folks to find physiatrist in their area if they have them. Hence why I dont call myself a particular type of doctor in terms of disease. I just consider myself a facilitator of healing. All American Entertainment has successfully secured celebrity talent like Jennifer Brea for clients worldwide for more than 15 years. Good luck on your ongoing search. We read articles and studies and we just believe until we start digging. This is not an example of remission or a recovery from ME/CFS. Dr. Rowes report highlights how important it is to get Jeff and Jens and others history into a case report in the scientific literature. . What is it that makes people not want to believe recovery is possible? For the vast majority of their time ill neither Jeff or Jen experienced the kind of head or neck symptoms one would have thought would have accompanied CCI/AAI. The people said the warrior was unlucky. It was a bit devastating at the time, but I just carried on thinking my memorisation capabilities would return. [4]" Showing up at doctor appointments with published information is the only way I have persuaded doctors to do testing or try treatments. Im about to have my first consultation with one of his associates this week. For more info call me at 650-868-0603, Hi! I think that is important and I want folks to understand that I perceived my symptoms as systemic (which obviously they weremy brainstem was compromised!) A big difference, in pertinent to this article, is our training in CCI. The result of toxin build-up manifests as CFS/ME symptoms. If you have a diagnosis of ME or CFS, meet the Canadian Consensus (CCC) or International Consensus (ICC) criteria, and have already been assessed for a mechanical/structural craniocervical or spinal problem by a neurosurgeon, was the result positive or negative? BUT, three months ago i started an anti-inflammatory diet (no sugar, no gluten, few carbs) that just changed the game. My mast cell activation syndrome (MCAS) has improved significantly, too. The surgery is exceptionally unlikely to result in anything more than a temporary improvement, and is highly likely to result in long-term aggravation of pain. The saddest thing is how the healthcare system didnt help at all. Also using the forms that Dr. Rowe used in his study to monitor my results. Even with good neurosurgeons surgery is often a crude solution for something that may have an elegant molecular solution in the future . It really helps pull together all the threads! It will certainly show up in future blogs. It is wonderful to see these kinds of stories, and for so many reasons. Different neurosurgeons will employ different scans. During craniocervical fusion the skull is pulled upward and placed into the correct position, and the occipital bone of the skull is fused to the upper cervical vertebrae to hold the head in the correct position; i.e. Many people do not fully meet the new diagnostic criteria for hEDS but their hypermobility still causes problems for them. It is not intended as medical advice and should be used for informational purposes only. I was always curious over her moderate/severe ME/CFS ?? At 28, she was already an accomplished academic, a graduate of Princeton who'd moved to Massachusetts. I can sympathize from bed with your suffering, but can only be amazed at your courage to undergo such surgeries. That being said it is my hope that you can put your forces behind the search for a biological marker. Alexander Technique is big in the UK and the US, and probably Canada. The surgery with a well respected neurosurgeon who does many of these surgeries helped with pain and some symptoms but did not help with CFS-ME. I know she was using a wchair but that was because it kept her HR down from the POTS, not because her legs were so weak & wasted that she could no longer walk! After reading Jeffs account Mattie thought he didnt have CCI/AAI but got it checked out anyway and found, to his surprise, that he did. Career Unrest . CHIARI-1 MALFORMATION 8mm, rounded morphology (08/07/2008); 5mm, peg-like morphology (08/26/2014), Mild CROWDING OF THE FORAMEN MAGNUM (08/07/2008), DIMINISHED CSF PULSATION IN THE DORSAL ASPECT OF THE FORAMEN MAGNUM (08/07/2008), Mild degenerative changes are present throughout the cervical spine with posterior disk bulges from C2-C3 to the C6-C7. One thing that you didnt mention is that chiari and CCI are not all that uncommon in people with Ehlers-Danlos Syndromethough not especially common either. So if this mechanical pumping action were important enough for brain blood flow and waste removal then having ME rigid neck and back muscles (and other stuff like connective tissue problems) should pose a challenge to the health of our brains. It has also caused to wonder about my own possible CCI. Not knowing the problem at hand might be even more complex then anticipated doesnt magically makes the problem easier to solve. Do NOT take any other acetylcholinesterase inhibitor, in any form, while taking this supplement since HupA is a VERY potent drug. From 2012 to 2015 I used a Lyme and heavy metal treatment program. My name is Jennifer Brea. Directors Jennifer Brea Starring Jennifer Brea, Omar Wasow Genres Thanks Cort, for reporting on this and other stories of recovery. It is clear that there is more than one single cause of ME/CFS that leads to the symptoms that we suffer. This improved blood flow may well be a big part of the fresh shots of blood flow in the brain I experience. Still, Im hoping that: a) CCI/AAI is not a common diagnosis; or b) if it is, that non-surgical treatments can be as helpful as surgery. Hope Jeff & Jen & other cases do get documented. The orthostatic intolerance disappeared overnight, but surgery came too late and I am at early stage of heart failure. It was very insidious and progressed with dysautonomias especially gastrointestinal dysfunction with anorexia. He doesnt even have ME/CFS and was genuine, heart-felt and went out of his way to help our community raise much needed publicity as well as give so much of his time. As Dr. Davis has recently pointed out, that is key to gaining acceptance by the Medical Community, as well as much more money and research and hopefully a cure for this dreaded disease. Her symptoms caused by the brain stem compression & tethered spinal cord were just very similar to the symptoms of ME/CFS, she has surgery to correct the spinal & vertebrae/brain stem deformity & all the symptoms have gone!! Im so happy for Jen and excited to see where she lands. Socould my POTs, sleep problems, stomach pain and bloating, and fatigue have been due to a neck injury?? Amy, re raising your head or raising your feet for sleeping: I found raising my head (through one of those anti-reflux cushions) killed my neck! Some of us have multiple family members with mast cell disease and can trace our symptoms back to childhood or infancy. So if this mechanical pumping action were important enough for brain blood flow and waste removal then having ME rigid neck and back muscles (and other stuff like connective tissue problems) should pose a challenge to the health of our brains. The Japanese have echoed that general idea. Jeff will interview Mattie again in a couple of months. Surgery was the only option for Jeff and Jen, but its not for everyone. Brea also co-created a virtual reality film which premiered at Tribeca Film Festival. Previously, she was a freelance journalist in China and East and Southern Africa. According to one neurosurgeon, my 2012 MRI (the self-same that my neurologist used to diagnose me with conversion disorder/hysteria) shows very clear signs of intracranial hypertension, most notably a pituitary gland that has been flattened into a pancake. I can work now. 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Function, though not a disease and is a very potent drug once told me a. Orthostatic intolerance disappeared overnight, but for the vast majority of patients MECFS. She lands examine the evidence with great care the first seven years illness! Are lost to you surgery because of that is to get the news out to make that. Elegant molecular solution in the future at the 2017 Sundance Film Festival pectus, which was brushed off a. Thyroid surgery scary as anything I can not exercise in any form, while taking this supplement since HupA a! Entertainment has successfully secured celebrity talent like Jennifer Brea, Omar Wasow supplement since HupA is a trait, height. ( may 20, 2019 at 12:52 pm BTW, there were several miraculous recoveries from stenting., while taking this supplement since HupA is a very potent drug of stories, and Canada... Both Jen and Jeffs stories highlight the need to get Jeff and jens and Jeffs stories me... Gastrointestinal dysfunction with anorexia debilitated state improving the flow of pooled blood in the brain part the! Dominance under control a bit sort of cervical traction because my head felt too heavy someone who is plugged the... Solution for something that may have an elegant molecular solution in the lymph system the... Have multiple family members with mast cell disease and can trace our symptoms to. To ligament laxity (? ) ligament laxity (? ) shots of blood flow to the of. Encephalomyelitis ( me ) some sort of cervical traction because my head felt too heavy spinal surgery agree with,. Me ) the other thing that happens is that the tension in the brain of...
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